Scared to death :/

[purplelily]

Hi all, hope you lovely people can make me feel a bit better!
I've been complaining to my doctor about fatigue and brain fog (although I didn't know it it as that - I thought I was getting early dementia) for over ten years, but it was only when I moved to a new doctor last April that they took blood tests and said that I MIGHT have Sjogren's. This was confirmed by a Rheumatologist in July. I was scared, but managed to put it to the back of my mind because - other than the fatigue/brain fog - I had no symptoms. The Rheumatologist put me on a low dose of Plaquenil (200mg), as he wanted to be sure it didn't react badly with my anti-epilepsy meds. About five months later I started getting dry-eye, swiftly followed by dry-mouth. This was in October. Just as I got my head around this, I started getting what I believe is peripheral neuropathy. At first this was just tingling in various places on my body, but this seems to be getting worse, and I woke up with really bad pins and needles in my hands and feet this morning, which took ages to go away.
I'm hoping you can help with a few things.
First, is it possible that the Plaquenil could be causing the symptoms to flare up more than they would normally? It seems strange that I would just have the fatigue and brain fog, then a bunch of symptoms at the time that the Plaquenil is supposed to start working?
Also, where Sjogrens is progressive, do the symptoms follow a 'set' pattern - for example, does it affect eyes, mouth, then liver, heart, etc., and does it progress at a steady rate? It scares me so much that I don't know what's going on in my body, I seem to spend half my time crying, then telling myself that it's okay because I should cry why I still can! 
I'm so worried about losing my job, and about being on my own for the rest of my life (I don't feel able to start a new relationship now that I have Sjogren's) - and I actually feel like life is over.
Maybe I'm being over-dramatic - did other people feel like this at diagnosis, and does it get any better?
Thanks all, I needed to get that out - I don't feel there's anyone I can talk to (and as you know, when you have issues that no-one can 'see' or have even heard of, there's not a lot of understanding from others). Apologies for such a long first post!
All the best,
purplelily

[paperdoll]

Hi all, hope you lovely people can make me feel a bit better!
I've been complaining to my doctor about fatigue and brain fog (although I didn't know it it as that - I thought I was getting early dementia) for over ten years, but it was only when I moved to a new doctor last April that they took blood tests and said that I MIGHT have Sjogren's. This was confirmed by a Rheumatologist in July. I was scared, but managed to put it to the back of my mind because - other than the fatigue/brain fog - I had no symptoms. The Rheumatologist put me on a low dose of Plaquenil (200mg), as he wanted to be sure it didn't react badly with my anti-epilepsy meds. About five months later I started getting dry-eye, swiftly followed by dry-mouth. This was in October. Just as I got my head around this, I started getting what I believe is peripheral neuropathy. At first this was just tingling in various places on my body, but this seems to be getting worse, and I woke up with really bad pins and needles in my hands and feet this morning, which took ages to go away.
I'm hoping you can help with a few things.
First, is it possible that the Plaquenil could be causing the symptoms to flare up more than they would normally? It seems strange that I would just have the fatigue and brain fog, then a bunch of symptoms at the time that the Plaquenil is supposed to start working?
Also, where Sjogrens is progressive, do the symptoms follow a 'set' pattern - for example, does it affect eyes, mouth, then liver, heart, etc., and does it progress at a steady rate? It scares me so much that I don't know what's going on in my body, I seem to spend half my time crying, then telling myself that it's okay because I should cry why I still can! 

I'm so worried about losing my job, and about being on my own for the rest of my life (I don't feel able to start a new relationship now that I have Sjogren's) - and I actually feel like life is over.
Maybe I'm being over-dramatic - did other people feel like this at diagnosis, and does it get any better?
Thanks all, I needed to get that out - I don't feel there's anyone I can talk to (and as you know, when you have issues that no-one can 'see' or have even heard of, there's not a lot of understanding from others). Apologies for such a long first post!
All the best,
purplelily

Oh heavens Purple Lily!
You have come to the right place.  I had to leave my job because I couldn't keep up and got brain fog so bad I'd panic because I couldn't think, read or continue what I was doing... that was just me though - this doesn't have to happen!  Many men and women on here will tell you they can still go to work.
I TOTALLY GET WHERE YOU ARE!

And you did not write too long and you are not over-dramatic sweetheart!  This is scary. Venus Williams also cried/is crying.  I have bad days where I feel like my life is over but then I feel better... a woman gave me a 5 year journal so i can remember good days.  She is a cancer survivor - she gave me great compassion!

Perhaps an alternative to the anti-malarial drug would work better for you?  Thoughts anyone? I once took plaquinil, and I've been on prednisone. I got better!  I went on and anti-inflammatory diet.  This winter is challenging for me and I may try and take something to chill out my body.  I did not care for gabapentin/neurontin myself but it works for some.  We all react differently to meds and foods.  It is trial and error.

I cried, I went through many stages of grief... any change is a loss kind of... meditation and prayer help for me also forums.  Deep breathing helped my periph too ans did Guided Meditations.  Biofeedback helped too!

Stress makes us all feel worse.
My current rhuemy said first "let's see you without so many meds so we know what is working and what isn't"
then they said "lessen or stop eating processed foods".

I hope my path helps you - take what works for you and toss the rest.  Read read read medical journals from all over the world!
Read natropath and osteopath articles, read Dr Oz and Weil read everything!

There is a book in my rhuemy's office Women, Work, and Autoimmune Disease:
Keep Working, Girlfriend! (Google eBook)
Rosalind Joffe, Joan Friedlander, L. G. Mansfield
Wish that was around 5 years ago!

All the best!!!!!

[KellyG999]

Welcome, Purplelily,

You are among friends and kindred spirits here. I am sorry you are dealing with all of this, and feel so discouraged.

I get that way, too. I pray, post here, take my meds and keep pushing forward. I took FMLA earlier this fall, but am back at work FT. I take it one day at a time. I only have enough grace to get through each day, and magically get more the next day! Otherwise I'd probably totally lose it.

Thanks for joining. Please keep posting. I don't take Plaquenil (after a 3 month trial of non stop stomach pain...) so I can't help there. Many people here use it and swear by it.

Hugs,

KellyG

[purplelily]

Paperdoll and KellyG, thanks so much for responding, it means so much to be able to talk to people who understand - it actually made me cry more to read your responses, but in a good way! 

Paperdoll - I'm so sorry that you had to leave your job - I'm downloading that book to my Kindle as we speak! I'm really looking forward to reading it, thanks so much for the recommendation.
I've completely stopped with the processed foods - and that did seem to be all I was eating before to be honest (it's just so easy to pop in a microwave meal when you're only cooking for one!). I've also given up alcohol, caffeine, and am 'in the process' of giving up wheat (I do love my pasta). Trying to give up stress too, but that's a toughie at the moment...maybe in time

KellyG - I had to Google FMLA! - I should have said that I'm in England. It's good to hear that I may be able to carry on working for longer. I didn't realise how much I love my job, until I felt that I might be losing it! It sounds like you had a tough time with the Plaquenil, I hope and trust that you've found something that works better for you.

Unfortunately, as I'm in England I can only see my Rheumatologist at my given appointments (the next one's in March), but I hope I can try something other than the Plaquenil...although maybe I haven't given it enough of a chance yet...I've read some posts on here that say it took a year until it really kicked in.

You guys are an inspiration, I hope that I'll eventually be in a place where I can help other people like you've helped me!
Thanks so much,
PL x

[Joe S.]

Welcome to the forum, purplelily. Take a breath in and think "I am", breath out and think "calm". Please release the anxiety. It will be okay. Most people do not experience side effects from Plaq. You can find a list of side effects here: http://www.drugs.com/sfx/plaquenil-side-effects.html

There are supplements, vitamins, and minerals that you can take. You can see some of them in our signatures. Most people will respond to PM's.

[purplelily]

Thanks so much for the welcome, Joe, and the suggestions - I've always had a tendency to get anxious, which obviously doesn't help with feeling better, I think that meditation exercises are definitely the way to go. I luckily don't have any of the Plaquenil side-effects listed on your link, so maybe I should stick with it a bit longer - it's definitely eased the pain in my joints. I've also started taking fish oils and B12 as a start - I'll probably introduce others.

I can't overstate how helpful this forum is to me, I'm so glad I found it and all of you.

All the best!
PL

[lolo1979]

Oh purplelily, I feel for you. I was exactly where you were about 7 months ago, right after diagnosis - I mean EXACTLY.  In fact, I think the name of my first post here was "new, scared and in a dark place". I too felt like my life was over.

I can tell you from experience that you will go through stages with this diagnosis. You will eventually reach acceptance and get tired of worrying and feeling sad and like your life is over.  You will find you don't have the energy for it.  And then you will start putting one foot in front of the other and move on.

You are still you.  You are still the same person you were before you were diagnosed.  Your life is NOT over.  You will date, you will NOT be alone all your life. You will keep working.  There's no saying what path your disease will take, but you will learn to take it one day at a time, and adapt your life as you need to.  Maybe you won't be a CEO of a company (shoot, who would WANT to be?!), but you will likely find something you can continue to do for a living. You can be happy.

I have only been diagnosed 7 months, but I am still working and do not plan on stopping anytime soon (not really an option for me).  I take plaquenil, restasis and evoxac, and those three meds have made a world of difference in how I feel.  There are also non-prescription meds that have been studied and proven to reduce inflammation:  vitamin d3, fish oil, turmeric, green tea to name a few. 

Feel sorry for yourself, cry, sleep the day away as you can.  Then, pick yourself up and get back to life. Do what you have to do to feel better. Do not let the diagnosis rule your life.  Ask yourself - what if I DIDN'T know this is what I had? What would I do? The answer is probably that you would get up and do what you had to in order to get through each day, while trying to find happiness and fulfullment.  So...do that. I'm not saying to push yourself to the point of overdoing it. Listen to your body and rest as you need to. But don't let the diagnosis itself define you or how you lead your life.

That's my best advice - again, coming from someone who went through all the same feelings as you.

As for the plaquenil causing the disease to flare more than normal, no one will have that answer for you. I think it is unlikely it is making things worse, but not necessarily impossible. Our bodies all react differently to meds. I have read an article or two saying that going on medicine makes it more unlikely that your body will "know how" to go into remission on its own. I guess the theory could be that it's not learning how to calm itself back down. BUT...I've also read that it's important to treat so that you slow progression (I've read more of these than the other).  The fact is, no one knows for sure, and everyone is different.  So you just have to go on how you feel. I've also read that some people don't start feeling the benefits of plaquenil for a year.  So, this probably all confuses you more than helps. Plaquenil is confusing! It ALL is!

Hope this all helps. Feel better, chin up!

[purplelily]

Feel sorry for yourself, cry, sleep the day away as you can.  Then, pick yourself up and get back to life. Do what you have to do to feel better. Do not let the diagnosis rule your life.  Ask yourself - what if I DIDN'T know this is what I had? What would I do? The answer is probably that you would get up and do what you had to in order to get through each day, while trying to find happiness and fulfullment.  So...do that. I'm not saying to push yourself to the point of overdoing it. Listen to your body and rest as you need to. But don't let the diagnosis itself define you or how you lead your life.

lolo, your whole post helped more than you know, but this part in particular made me think. You're exactly right - it's made me realise that if I was just feeling the symptoms, but didn't have a 'name' for it, I would just get on with things as normal. So, that's what I'm going to try to do.

Your comments about acceptance ring true, too. The work I do is centred around disabled children, and it's always said that once parents realise their child has a disability, they go through a 'mourning' process, ending in acceptance...I think that once diagnosed, we probably go through a similar type of process.

Your sentence about the CEO made me laugh - I've NEVER understood why anyone would want a job with loads of responsibility, but that probably just says more about my work ethic 

Thanks again, so much x

[irish]

I guess I would not assume that the plaquenil is causing the dryness. I had sjogrens symptoms for about 40 years with joint pain, terrible fatigue, depression, bladder issues, slight dry mouth involving loss of teeth and many other various transitory ailments. I did not get diagnosed until 2003 with a positive lip biopsy. This was in September and the end of October (for the first time) the dry eyes started in.

Actually, the balance issues and dizziness came many years before the dry eyes. We are all different and one can be feeling half way normal one day and get up the next day with more ailments than you can shake a stick at. It is the nature of the beast. Stop and think how much worse your dryness and symptoms might be if not for the plaquenil.

Many people on this forum quit the plaquenil thinking it was not doing any good only to find that they are much worse without the plaquenil. Good luck. Irish

[LizPetillo]

Sjogrens is progressive ... so the 200 mg plaquinel might not be enough now.  Only your doctor could say for sure. 

[Carolina]

Dear Purplelily,

Welcome.   Your reaction is pretty much normal.  But after a while you'll realize that life goes on!

AND, this is key, everyone has different experiences here.  Not only do different people get different aspects of their condition in different sequences, but also in severity. 

AND, the is the second key, everyone responds differently to medications.  A medication that is perfect for one person may do nothing for a second person, and may send a third person right round the bend!

AND, this is the third key, your response to a medication may change over time.   I've had things just stop working, or start to cause side effects.   

Those keys are what makes Sjogren's and other auto immune conditions so difficult for many doctors, and of course for all of us.

Nothing is a given, except we must listen to our bodies, find all the special ways to help ourselves physically, emotionally and spiritually.

Most of all, we need hope and the TLC of support and information, love and laughter.

We do laugh here!   Believe me.

Now, please keep posting.  Anything and everything that is on your mind.  It really helps to write down what you are feeling no matter how weird or scary or 'bad'.  Come here to share.

This disease is NOT YOU, it is a part of you, perhaps, but it is not your destiny or destruction.   

Joe has it right:  I AM CALM.    Keep breathing.   And keep us posted on everything.

HUGS and welcome

Elaine